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Musings from a Lymphedema Lady – A Guest Post by Jan Hasak

The following is a guest post by Jan Hasak. Jan is a breast cancer survivor, mother, attorney (presently inactive), author, motivational speaker, volunteer, advocate and someone I am happy to call a friend of mine. Jan was also recently diagnosed with mets. Lymphedema is another one of those words I’m not sure I had even heard of before my cancer diagnosis. It’s a topic much neglected and misunderstood. This post is packed with valuable information, so please read and leave Jan your thoughts and questions.

Lymphedema: It’s a word always with a red squiggle beneath it. Computer programs don’t recognize it and neither do most people.

So what is it, and why should breast cancer survivors care?

Lymphedema is the swelling of a human body part caused by an abnormal accumulation of fluid, proteins, and cellular waste in the tissues under the skin. It occurs when there is a problem with the lymphatic system caused by one of the factors below:

•  The failure of lymph vessels to develop properly

•  Damage to lymph vessels by trauma, surgery, or infection

•  Removal or destruction of lymph nodes, usually during treatment of cancer

Musings from a #Lymphedema Lady #breastcancer #LE

Most of the advancements made in the understanding and treatment of lymphedema result from research on those who acquired lymphedema as a complication of breast cancer treatment.

I developed lymphedema over 14 years ago. This happened about a year after I had had radiation under my armpit from which 14 lymph nodes were removed (axial dissection) to see if my breast cancer had spread. My underarm operation was performed before the sentinel node biopsy procedure (now standard practice) was even a gleam in a surgeon’s eye.

I don’t recall that my small-town surgeon, or the radiation oncologist gave me any pamphlets about lymphedema after I was treated. The surgeon did warn me that I should not have blood pressure taken or blood withdrawn from my left arm. What he failed to mention were other risk-reduction practices that might have made a difference, such as those mentioned in the National Lymphedema Network position paper on risk reduction practices.

To reduce the risk, many therapists advise patients to have their arm fitted for a compression sleeve to be donned during plane rides longer than four hours. But newer findings indicate that cabin pressure at high altitudes may not make a difference in swelling. In addition, survivors may wish to wear the sleeve when lifting heavy objects with that arm. Again, one should consult the NLN position paper mentioned above as well as Step-Up, Speak Out on risk reduction practices to get current, reliable doctor-approved advice.

I used to wonder if all my plane trips to Europe on business in the year between my surgery and the first appearance of arm swelling contributed to my arm lymphedema. Perhaps the accumulated travel combined with garden pokes pushed my lymphatic load over the edge.

But many experts in lymphology now are surmising that those who develop lymphedema do so because of a genetic predisposition.

Also, some people are born with more lymph nodes than others, providing a more protective effect. Both my parents had varicose veins and my father’s legs had to be amputated due to poor blood circulation, so maybe their combined genetic pool made me more susceptible.

Here are some common misconceptions about lymphedema–and the skinny on the truth.

Myth 1: It is a curable condition. While it can be managed, lymphedema is a lifelong condition that will not go away over time. In fact, because it is a chronic progressive condition, even mild cases can eventually escalate and have serious consequences if not properly treated.

Myth 2: It will only develop within the first five years after surgery and radiation.

Although we wish this were true, people can develop lymphedema at any stage in life. I have heard of a cancer survivor who 30 years after her treatment, developed lymphedema after reaching up to pull down a garage door. It may be uncommon, but it can happen.

Myth 3: Lymphedema will make one’s arm huge.

One-size-fits-all is not true for lymphedema. Like cancer, lymphedema has various stages. Stage I is mild, Stage II moderate and Stage III severe. I’ve seen pictures of a lymphedemous leg grossly misshapen, and I’ve seen cases where I could hardly tell the person had lymphedema. I’ve been fortunate in having only a mild case.

Myth 4: The sentinel node biopsy that only removes a few lymph nodes stops lymphedema from happening.

The procedure, while reducing the incidence of lymphedema, has not eliminated it. Genetic predisposition to any disruption of lymphatic flow may tip the scales.

Myth 5: A person at risk for lymphedema or who has it should not carry heavy objects.

This has recently been disproven. In fact, gradual lifting of weights with a compression garment helps with lymphatic flow. See the most recent findings on lymphedema and exercise.

Myth 6: Lymphedema can be cured in six weeks, allowing the patient to move on with life.

The gold standard for lymphedema treatment is complete decongestive therapy, which consists of two stages: a clinical phase where a lymphedema therapist performs manual lymph drainage and bandaging, and a self-care phase where the patient or caregiver performs the daily massage and bandaging. The clinical treatment may only take 4-6 weeks, but managing lymphedema is a lifelong process. It can be kept under control, but depending on the severity, may require wearing a compression garment 24/7 and performing daily massage and stretching exercises. Daily skin and nail care is a must for all people with lymphedema.

I am able to get by with wearing just a daily compression sleeve on my arm. I also perform exercises that are beneficial for lymphedema, including active-elongation stretches on a stability ball and swimming. But everyone responds differently.

Online resources on lymphedema abound, e.g. the NLN site, Lymph Notes, Step Up, Speak Out, and Vascular Web on Lymphedema. Online support groups include Lymphedema People and Lighthouse Lymphedema Network.. We’ve come a long way on the Internet since I was diagnosed in 1997.

If you notice any swelling in a limb after removal of lymph nodes, even after a sentinel node biopsy, see a surgeon right away. The earlier you catch it, the better. If the doctor does not listen, go to another M.D. who will. And if you are diagnosed, insist that you get a prescription for lymphedema therapy. I’m glad I did.

Never despair!

You can lead a normal life after lymphedema. Some patients turn the anger they feel toward their surgeon in not informing them of lymphedema into legislative and other action to ensure more research is directed toward this under-served condition. Others start Web sites and blogs to provide needed information to patients at risk and those with lymphedema. Still others go on to live their lives without fanfare. All of these are terrific responses, just as they are for breast cancer survivors.

Whenever I type “lymphedema” on the computer and get that notice of a possible misspelling I right-click it and add it to the dictionary. Eventually every computer app I use will get the message, as I hope all people will.

Bio:  Jan Hasak is a Motivational Speaker, listed in the 2011 National Cancer Survivor Day Speaker’s Bureau, Reach to Recovery Volunteer for the American Cancer Society, Lymphedema Patient-Advocate for the National Lymphedema Network, Board Member of Lymphedema Advocacy Group to promote awareness of U.S. federal legislation on lymphedema and Author of:Mourning Has Broken: Reflections on surviving breast cancer and The Pebble Path: Returning home from a forest of shadows.

What are your thoughts, comments or questions about lymphedema?

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Lymphedema - A guest post by Jan Hasak

image from vascularweb.org


Musings from a lymphedema lady, a guest post by Jan Hasak

Understanding lymphedema

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Michelle

Monday 22nd of July 2013

LymphEdiva, Ha, I need to fix my computer's dictionary, too.

Nancy

Monday 22nd of July 2013

Michelle, Guess we all do!

Denise Billings

Sunday 21st of July 2013

Hey Jan,

Thanks for the informative article. Your story sounds a lot like mine. I had triple negative breast cancer. After 5 years I noticed a slight swelling in my wrist and thumb. My cancer doc tried to blow it off, but I insisted something was wrong. I couldn't wear my watch either. Finally was diagnosed and had the physical therapy. Now I wear my sleeve and gauntlet (fingerless glove) all day and I can sleep without it. I definitely wear it on planes. I do the daily manual drainage exercises the physical therapists taught me and so far so good. No change in the swelling.

I was crushed when I learned the lymphedema would not go away. As someone else said it's a real blow to the self-esteem. I could walk around before as a cancer survivor and no one could tell. Now with this sleeve, there are always questions about my health. My physical therapists warned me that I would always have to answer questions. I have it down to a short and long version of an answer. I try to remember that everyone has good intentions and I get to educate more and more people on lymphedema. But sometimes it's just a pain.

I found LympheDivas and got some cute sleeves and gauntlets and that helps me be more willing to wear them. I'm still not happy about the whole thing. None of my cancer medical team mentioned anything about this possibility. They were so thorough about everything else.

The lymphedema physical therapy team leader at my hospital, St. Josephs in Burbank California, was passionate about keeping abreast of the newest treatments and she has workshops for us patients to keep us in the loop, too. I appreciate that. It's been 10 months since my diagnosis and I'm still trying to get used to this new reality. One day that will happen.

Nancy

Monday 22nd of July 2013

Hi Denise, Thanks so much for sharing about your experiences. There is much to get adjusted to isn't there? Good luck managing things.

Michelle

Monday 22nd of July 2013

Thank you so much for this article, and all of the comments that follow. Denise, I feel the same way, I finally got to a place where my head doesn't look "chemoey" (as my children say) but just yesterday,as I donned my new lymphodiva sleeve, two strangers asked me if I had a new type of cast on my arm. I was caught of guard. My reply, "I have to wear it to keep my juices flowing"...WHAT??? They were as perplexed as I was hearing that come out of my mouth. Off the cuff (no pun intended), strange answer. Oh well, I guess I will have to come up with an educational stock answer, that will keep me from reliving this nightmare everyday, and also educate those that need to know! Again, thank you all for your posts, and Jan for this article!!

Kristi

Sunday 21st of July 2013

Thank you so much for sharing this and including so many resources. I developed lymphedema last year at the age of 37 after axial dissection and radiation for breast cancer. Although it was stable over the winter, it has progressed during the heat and humidity of summer. I am a dedicated runner and, while I know exercising with a compression sleeve can be beneficial, running outside seems to be worsening my condition. It is very frustrating and disheartening to say the least but I refuse to give up. I am working on managing lymphedema with the help of my physical therapists and self-care. It is just comforting to know I am not alone. Thank you.

Nancy

Monday 22nd of July 2013

Kristi, You're definitely not alone. Good for you for refusing to give up. Managing lymphedema can certainly be challenging, so I'm happy to hear you have some good help. That is key. Thank you for sharing. Your words will help others.

cyndi

Sunday 21st of July 2013

I began with cording and extreme tenderness in that arm about 2-3 weeks after 7 nodes were removed. Hadn't heard of it, couldn't get any help, finally had first visit with oncologist & he helped me get started with a therapist. I'm wearing a sleeve & gauntlet every day. I don't want it to get UNmanageable! I'm a homebody, I don't require much travel.... But my first grandbaby will come via c-section Aug 5... They live in Virginia & I'm in Texas... Been 30 yrs since I flew... Although we won't be in the air all day, it'll take all day to get there... Any tips for me?

Nancy

Monday 22nd of July 2013

Cyndi, I'm glad you are seeing a therapist. I would definitely ask her and/or your doctor for tips before you travel that would be specific for you. Be sure to wear loose and comfortable clothing along with your sleeve and gauntlet. Be prepared for some possible odd happenings when going through TSA. I have a post on that you might wish to read. http://nancyspoint.com/getting-through-tsa-as-a-cancer-survivor/ Some people prefer to put their sleeves on after going through TSA. Have fun visiting your new grandbaby! So exciting!

Kristy

Sunday 21st of July 2013

I was diagnosed at 39 with breast cancer. When they did my bilateral masectomy and just took out 2 nodes one came back. I had to have another surgery and had the rest removed. I have had tissue expanders in and out and infections and expanders back in. 7 surgeries. I have had minor swelling and actually had lymphatic fluid draining from my incision site on my opposite breast from where I had the lymph nodes removed. I drained for months until they filled my tissue expander enough that it didn't leave a pocket for fluid build up. Like they say you don't know what lymphedema is until you have it. I wish there was more information out like this about it. Thank you for your tips and information. :)

Nancy

Monday 22nd of July 2013

Kristy, I wish there was more info as well, but the links in all my LE posts do offer some great resources for starting points. Please read Jan Hasak's blog too and check her link resources. There is help available. Its sounds like things are going better for you now, at least I hope so. Thanks so much for sharing.

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